Yes, I'm sure I'm sure...

[ilovelucy]

My c-section is officially scheduled for this coming Monday and I'd be lying if I said I was prepared. When I came to this message board originally, I was comforted by everyone's kind words and their offers of support. I found peace here and gained a lot of confidence from hearing the successes of others and looking at a multitude of adorable pictures, reassuring me that SB isn’t advertised across a distorted lethargic little body - that these are actually normal looking people that have an identity much stronger than that of their impairment.
Well, my peace lasted a mere 2 weeks, when I returned to the doctor and they told me that Lucy was a "particularly" difficult case and sent me to speak with the neurosurgeon who also told me he speculated that, due to her aggressive hydro, he doubted very seriously that Lucy had been able to grow any brain matter whatsoever. They said that, based off their best assumption, she will never read, express appropriate emotion, gather thoughts or have any chance of thriving independently. After having an MRI, they discovered that a brain exists beyond its base although it is so compressed that they have no idea if there's any substance behind it until they relieve the pressure. They even told me at an appointment 2 weeks ago that they doubted Lucy will survive until birth based off the size of her head.
I've never been so terrified and heartbroken. Nothing they've said is positive other than commenting how strong her movements and practice breathing has been the last couple weeks and they mentioned today, as a side note that they believe her opening is relatively low on her spine and isn’t the kind of SB that extends outside of her body (?) whatever that means… All the dire news from the doctors made me stop coming to this site. I didn’t want to let myself find false hope if Lucy is as bad as they say. I didn’t want to see positive outcomes when all I've been told is how Lucy is worst than most. I didn’t want to see your adorable children knowing that my Lucy wasn’t likely to survive.
Anyway, I wanted to come back here and reach out again - find some understanding.
I'm so incredibly scared for her. They've always given my husband and I this look in the doctor's office like,
"Are you sure you're sure? Are you sure you want to have this horribly troubled baby? Her life is really going to maybe suck and so might yours because of it - sure you don't want to back out now since she may be so damned retarded?"
I say this sarcastically but it's true. They've given me no hope. Is this common? I've heard (by people trying to make me feel better, of course) that doctors notoriously paint grim pictures to protect themselves from lawsuits and then would especially in a situation like mine where my husband/Lucy's father is an attorney. I pray this is true but they have yet to break character of "Dr. Debbie-Downer".

So, how does one mentally prepare themself for this? Can you? I suppose this is just another one of my rhetorical questions, as I imagine this can only be dealt with one day at a time.

Thank you, everyone, for allowing me to get this out. If you remember, please keep Lucy in your thoughts and prayers on Monday.

Annie

[ilovelucy]

Just making a 10th post so I can post an album. :)

[Alvy]

Hey there! I can't help you much with regards to your questions. But do pray to God and ask Him for strength and courage to deal with this. Remember that God doesn't give one more than he/she can handle. Don't mean to be all religious and all but no harm isn't it? You have come this far into your pregnancy and I don't think its worth giving up, so to speak. Keep pressing on, I'm sure everyone here on this site is cheering you on somehow! I'll keep both you and Lucy in my prayers that all turns out well on Monday and in future. Do keep us posted! May God bless you and Lucy, guide and walk with you through this tough period. :happy065:

[Dodger67]

"Hope for the best but prepare for the worst."

I've made a note on my calendar for Monday - you and yours will be in my thoughts.

In spite of the sometimes relentless optimism and positive messages we put out here, it is important to realise that yes, there sometimes are very tragic outcomes.

If your baby does turn out to be so severely affected as to have zero intelligence or is unable to experience any of the joy of life, you do have the option to refrain from treating her condition agressively and to let her go as gently as possible - nobody here would judge you for such a decision.

[Gymp]

Very well said Roger!

A long long time ago (just days after I was born Nov.1956) my parents were sitting in the doctors office waiting to hear what the prognosis for me would be.The doctor came into the office,sat down,put his feet up on his desk,closed my file,tossed it on his desk,looked at my parents and said,"What's the point,he'll be dead before the age of two." He then got up and left the office,leaving my parents to decide whether to take me home or not.

Annie,I'll be saying a prayer for you,your husband and Lucy Sunday night and you'll be in my thoughts come Monday!

Gymp

[LisaJoy]

Annie, I'll be praying for Lucy and your whole family throughout the weekend!

[angel]

My parents were told that I wouldn't live through the night, then the week, then the month. They didn't know about my SB until I was born. I have been told this story many many times. I was given a 50% chance at surviving and from the stories I have been told I apparantly grabbed my 50% chance and ran like hell with it! The surgery to close the hole wasn't done until I was 6 days old because my dad didn't want me to go through that and i guess "go" peacefully. My mom more the optomist wanted the surgery done so it was done as soon as she was out of the hospital and able to join my dad and I at the children's hospital.
I am 32 now and living a great life.
I can't imagine how you must feel but i will keep you in my prayers! Like Dodger said hope for the best and try to prepair for the worst. I will keep you and your family in my prayers and I will say a special prayer for that baby that hopefully he or she will prove them all wrong!

Hugs,
Angel

[jessiesmom12202]

there is no way you can really prepare but you just take each day and make it the best. my son is 7 monthes now and is doing really good. i thank God for putting him in my life to make me stop and really smell the roses and to be thankful for the things that i really have. Not the things that i may think i need.

[leigh828]

Oh Annie, my heart is breaking for you. My son is 6 months old and we were also told that he would have brain damage (he doesn't), and were given the option to terminate (we obviously didn't), I don't know what the outcome will be for your sweet Lucy, but please know that Lucy and your family will be in my prayers. I have told myself over and over and over again that only God knows the future and that I must try to give all of my worries and fears to him. Please try to do the same, and enjoy your last few days of being pregnant. Keep us posted when you can.

[dahliafaolan]

Oh Annie, I am so sorry that you are having to go through such heartbreak. All I can do is share with you my mother and my experience at my birth. Back in 1985, I guess ultrasounds and such weren't as powerful as they are today. No one knew of my Spina Bifida until they pulled me from her stomach. (I was an emergency C-section.) Needless to say, the doctors and nurses all freaked. When they finally told my mother what happened when she woke up, they told her that I was pretty much going to be a vegetable that would only be an emotional and financial burden. They also told her and my father that I might not survive the night. The priest was called to give me an emergency baptism that my mother didn't even get to see. Well I survived the night. They advised Mom to give me away to an institution or to just let me go quietly. My mom told the doctor to screw himself. When I survived the night, the doctor told Mom that I wouldn't survive past the age of ten.

Well, I'm 24 now and I'm a college graduate. Like the others said, prepare for the worst, but hope for the best. Not everything the doctors say is gospel. They're guessing just as much as you. Just no matter what you do, treasure your little one as the gift from above that Lucy is.

[XoBLoNDiE85]

Hi Annie.....first off I want you to know that i have and will continue to pray for you, baby Lucy and your family. This is a very stressful time in your life, just remember God is in control!!! and "you can do all things thru Christ who strengthens you" Cling to the Lord...thats the only way we got thru Hannahs birth and still how we get thru daily situations (along with this board of course hehe) Here is a verse that just stuck out around the time Hannah was born "For You, O Lord, are my hope, my trust,O Lord from my youth. Upon you I have leaned from before my birth; You are he who took me from my mothers womb. My praise is continually of you" Pslam 71:5-6 Not trying to throw scripture down your throat just sharing what helped me during this time. Try to stay strong for little Lucy and know we are always here for you! :happy065:

[XoBLoNDiE85]

Oh and another thing they told us time and time again (not her neurosurgeon) to terminate. They called us everyday for the longest time til i finally went off on them and told them shes is my dauighter no matter what and i will not abort her....its not up to me to take her out of this world!! They said she'd most likely me a vegetable and have a poor life. She is completely fine other than some paralysis from the knees down and has a VP shunt! Don't trust the doctors 100%...yes they could have some truth but not all.

[janjanwhit]

The doctors will always give you the worst case senario and you would be a fool to believe they never happen. There are miracles out there though. What comforted me is that if my son had died at birth I would know that I had done all I could have for him. I loved him enough to have tried my best. God loves your baby more than you ever could! I bet Lucy feels loved. I will be thinking of you both.

[marci]

Hi Annie, I hope you have a chance to read all of these posts before Monday, they say everything that you need to hear at this horribly difficult time. It brings back so many memories for me - of when my son was born 14 years ago. I agree with everyone now, that the doctors really do give worst case scenarios, however you really cannot know until your daughter is born. And it is true, God is the only one in control now. During the time I was in labor, I recall a hospital chaplain coming in to pray with us, and I can't recall her words - but it was something to the effect of telling us not to take any of this stress upon ourselves, becasue God was the one in control, and he would make the decisions. Prior to delivery, we have firmly decided not to have any recussitation or life saving measures performed on our baby. We felt that if God wanted him to live, then he would be born with the strength to do so. If he was not meant to live, then God would take him right away. As it turned out, our baby came out breathing, crying, and did not need any life-saving interventions. Our path at that point became very clearly defined, he had the surgery to close his back, inserted a shunt, and the rest is history.

I don't know if this helps you or not, but hopefully just knowing that you are not alone in this, and people are thinking of and praying for you . Please put your fate in God's hands, and allow him to carry you through this journey.

[Barb]

Hey Annie,

Have you read CelticWinters story? You might find some peace in it:

http://spinabifidaconnection.com/showthread.php?t=999

[LaceyRae]

That touched me in a profound way. My heart breaks for your family and daughter. I am 34 weeks along and 5 weeks from the Monday you have Lucy, I will be having my son. I understand your fears, although they didn't give us such a grim outlook, more like, you know this baby will be a lot of work right?!? And of course I do! We wanted this baby and I just feel like it would be much more difficult to deal with the guilt of not trying because you were afraid of how it would affect your life then pray that this baby is exactly the way they are supposed to be. I went through a time that I didn't get on here either, tonight actually being my first time back, scared of the fact that your baby might not be so precious or "normal" as these...but these sites have helped me so much in connecting and understanding. I'm getting really scared now, because it's more real than ever, but we are all these babies have. I will pray for you and Lucy (such a cute name by the way) Be strong -Lacey Reed

[Peanut'sLoved]

I wish I had a crystal ball and could tell you the future to make you feel better but I dont, all I can do is tell you from my own personal experience and having my little girl. She was born 2 weeks ago- the doctors in the beginning kept giving me hell about terminating and how her life was going to be so terrible and how we were a young couple and could have more children in the near future.

At each prenatal visit the doctor would inform me how bad her hydro. was getting and her head size increasing. My heart would sink. Well let me tell you, when my little girl was born you couldnt even tell she ahd hydrocepalus unless you looked at the back of her little head where the shunt sticks out. First off, they dont really know until the baby is born. Secondly, not all cases are the same. About 75% of SB children will have average intelligence with some learning diabilitys like doing problems. Dont lose hope- where theres a well theres a way! Plus your babies almost here- theres no turning back.

When my little girl was born the doctors were shocked at how good she came out- she breaths on her own, eats well on her own, moves almost all her body parts except her little feet (L5) and everyday since then she has been nothing but a blessing in our lifes:)

[valerie]

i am probably too late for you to see the post before you go to hospital, i just want to wish you the very best of luck today & will be thinking & praying for ye xxxxx

[Dodger67]

When my little girl was born the doctors were shocked at how good she came out- she breaths on her own, eats well on her own, moves almost all her body parts except her little feet (L5) and everyday since then she has been nothing but a blessing in our lifes:)

That just goes to show yet again how extremely ignorant most doctors are about SB. The only "treatment" for SB they know is "kill it!".
This is one of the biggest issues the SB associations should be adressing:

Educating the doctors (particularly, GPs, OBs, etc.) to not be such relentless pessimists. Just think how many millions of people just like most of us here have already been killed for no good reason.
The simple truth is that the "vegetable" outcome is an extremely rare exception - not the rule.

[leigh828]

Just wanted to let you know that there are prayers going up for you and Lucy right now! :)

[abbysdad]

I don't want to offer false hope, but I'd agree with the others that doctors can sometimes be overly pessimistic and say negative things without supporting evidence. That has certainly been our experience some of the time (not all).

There seems to be quite a bit of anecdotal 'evidence' that at least some people with severe hydrocephalus lead perfectly ordinary lives. Here are a couple of links that might be of interest. I don't know how reliable they are though (apart from the one in the Lancet, as that would have been carefully checked out):
* http://www.eurekalert.org/images/release_graphics/pdf/brain.pdf (from the Lancet)
* http://www.thenakedscientists.com/forum/index.php?topic=9094.msg109515 (summary of the Lancet article)
* http://www.flatrock.org.nz/topics/science/is_the_brain_really_necessary.htm (bad title, but interesting content - several cases mentioned)

Thinking of you guys today. Really hoping yesterday went OK for you and you're hanging in there. Regardless how things go, we're all here for you.

[Bigwilli]

Hi Lucy,

I don' have an answer but I do feel compelled to share my experience. Me and my wife were just trying to cope with our daughter having SB when one of the younger doctors said she may have mental retardation due to a lack of development of the brain and it forming right. He even had to go look up the term and prognosis. This was due to his interpretation of the ultrsound. Needless to say we were devastated having to deal with this also. The next day we got a call saying they made a mistake and the ultrsound was misread. Ya right ooops.

I wish I had an answer for you but what I have come to realize is that what you hear from doctors is not the end all. Remember that

[XoBLoNDiE85]

Bigwilli you re soooo RIGHT!!!!

[valerie]

So true at times, Bigwilli!!!

[dahliafaolan]

I don't want to offer false hope, but I'd agree with the others that doctors can sometimes be overly pessimistic and say negative things without supporting evidence. That has certainly been our experience some of the time (not all).

There seems to be quite a bit of anecdotal 'evidence' that at least some people with severe hydrocephalus lead perfectly ordinary lives. Here are a couple of links that might be of interest. I don't know how reliable they are though (apart from the one in the Lancet, as that would have been carefully checked out):
* http://www.eurekalert.org/images/release_graphics/pdf/brain.pdf (from the Lancet)
* http://www.thenakedscientists.com/forum/index.php?topic=9094.msg109515 (summary of the Lancet article)
* http://www.flatrock.org.nz/topics/science/is_the_brain_really_necessary.htm (bad title, but interesting content - several cases mentioned)

Thinking of you guys today. Really hoping yesterday went OK for you and you're hanging in there. Regardless how things go, we're all here for you.

I think it's rather interesting that you posted the first two articles. I have cousin that was born with only half a functional brain. Now, I'm not sure if that means she was just born without the other half or if the other half is essentially just dead tissue. But aside from slight epilepsy which we are pretty sure she has outgrown now and a tiny weakness in her left side, you'd never know.

[Gymp]

Along the same lines,I post this here at the forum a long time ago....

http://spinabifidaconnection.com/showthread.php?t=598

Gymp

[hope&faith]

I have been away for awhile as we've recently brought our twin sons home and could only cry while reading this. I pray your baby will amaze all the so called experts and whatever the outcome, that God provides you and your family strength and peace for whatever is yet to come. The doctors are horribly pessimistic and we were told repeatedly my son would likely not make it through the pregnancy, and would take my other son with him as they shared a placenta. They gently but persistently encouraged me to consider termination but I know if it wasn't for my having been pregnant with twins, they would have pushed even harder because they also spoke about my "healthy" son and what would be best for him. When it was clear I wasn't interested in terminating my babies, they wanted me to be aware of the option that we could withhold lifesaving treatments for Alex after delivery. My heart still breaks at the memories of those days and worries. My sons were born incredibly small and frail due to placenta problems and that is why they had to struggle so hard in this world but ironically, it was ALEX that was strong enough to come home first, even with everything he had to surmount. None of the doctors or nurses could beleive his fight. I share my story with you in hopes of bringing you hope. I pray that this is the case with your baby and you will continue to be in my thoughts and prayers. Please update whenever you are able.

[Barb]

Would love to hear an update from you when you can. You have been in my thoughts

[Lifeisgood]

I am just reading these posts for the first time today, and while we here in the forum don't yet know how things turned out for you and your family, please know that you are not alone in this. There will be good days ahead, and not so good days ahead. Please keep sharing both of them with us. That is why we are here. I am keeping you all in my thoughts and prayers and praying that you will find strength and hope in each of your days.
Sincerely,
Laurie

[ainemc]

i will be thinking of you on monday, doctors do tell you the worst possible outcome and often it is not as bad as you anticipate. i will be praying for you and your little girl x